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When I Went From Being 'That Sick Kid' to 'That Sick Adult'

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I was the sick kid. You all know exactly what I’m talking about – you may of even been that kid too. The kid who missed days and weeks of school because she was in the hospital. The kid who got special treatment at school because she couldn’t do what the other kids were doing because it wasn’t healthy for for her.

I was that kid.

I started fourth grade with an oxygen backpack and a note saying I had to ride the accessible bus because of it. I hated it, I hated the fact that that’s how everyone saw me when I was so much more than my disability. I was more than oxygen tanks and tubing, I was a kid. I loved drawing, and playing with barbies, doing normal kid things, normal stuff that no one saw because I was different. I didn’t have friends who could see that either, no one from school saw me outside of those walls, so it was all they knew me as.

I smiled back when the kids stared me down because that’s what I was taught to do. I smiled when the teachers made sure I was included in all of the activities everyone else was doing as long as it was safe for me. The teachers always made sure my needs were met.

I didn’t want to be “included,” I just wanted to be the same as every other kid there. But, I wasn’t and no one understood that more than me.

Everyone was nice. I never had any issues with bullying me or being rude towards me, but no one was exactly jumping through fences to be exactly friendly towards me either. It was mostly smiles and nods, which was fine, as long as they were nice.

My childhood was lonely. I didn’t have anyone to talk to besides my family. As hard as they tried they make me feel normal, they didn’t understand what I was going through.

Most days I didn’t like going to school, and when I did like going, I just felt like an outcast and couldn’t wait to go home. When I was in sixth grade it was decided that I should be homeschooled because I was just missing too many days and the public school wasn’t working for me with my declining health. So when everyone started sixth grade, so did I. My teacher was amazing, and she came to my house three days a week and that was enough for me. I loved it because I had the freedom to do what I wanted without being marked absent. I never got the chance to go back to public school and when I was 18 I graduated from high school, and it was over and done with.

What was my life supposed to be now? College wasn’t an option for me, I was too sick to get a job, and suddenly my feelings of loneliness came creeping back into my mind. If I couldn’t even support myself, who was I supposed to be?

I went from that sick kid to that sick adult and I never thought my life would be like this. I had always been such a talkative child but somewhere along the way I lost my voice. I lost the one thing I needed in this world and I couldn’t find it no matter how hard I tried. I didn’t understand why I had to make all of these decisions now that I was an adult. I was 18 and it was on me now, but I didn’t want it to be. I liked being taken care of, being looked after by people who wanted nothing but the best for me. That part of my life was over, I had to make the decisions now and it’s the hardest thing I’ve ever had to do.

I’d spent my childhood in and out of hospitals having doctor after doctor looking after me, nurses and respiratory therapists making sure I pushed through my struggles and came out stronger than before. They all wanted the best for me, so how was I supposed to know what the best was? What was I to know what to say, what to do now? I was lost, and I thought I would never get the hang of it, but I did.

I got used to being in charge. I learned that it wasn’t any different than before, I was just in charge instead of my family. I started making videos and doing awareness projects just anything I could to try and understand this unexpected life. I got used to things. I’ve been in this health world officially for 16 years and I’m finally adjusting to this life. I have a long journey ahead and it’s going to get harder, but I’m excited for the journey. I’ll be fine.

That “sick” kid.

Getty Image by KatarzynaBialasiewicz

Originally published: July 19, 2018
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